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Treatment Logs

Keeping an accurate treatment log is an essential part of managing your bleeding disorder for several reasons:

  • Treatment adjustment. Review of your treatment log is essential to determine whether you have a target joint, how your medication is working in your body, and if you need to change treatments based on a possible increase in the amount of factor that you are using
  • Insurance purposes. Most insurance carriers now require that you keep a treatment log to ensure that you are using factor as ordered and as a condition for continued reimbursement
  • Disability benefits. A treatment log may help support any disability claims you make. If you apply for financial help from Social Security, you will need to make a strong case that demonstrates how your bleeding disorder affects you. A clear record of your factor infusions and bleeding episodes is necessary for building a successful claim
  • In case of a recall or issue with factor. If there is a recall or issue with a particular clotting factor, the only way you will know if you have received it is if you have kept thorough records of the name and lot number of every treatment you take

What to Include in a Treatment Log

A treatment log should track all factor infusions and all bleeding episodes.

Here is some information that should be recorded in a treatment log:

  • The date and time of the bleed
  • The location and severity of the bleed
  • How quickly the bleed was treated
  • The treatment used (include the brand name, the expiration date, the lot number, and the number of units administered)
  • Additional steps taken to manage the bleed (for example: pain medication, an ice pack, compression bandages)
  • The level of pain

If your infusion is not in response to a bleed, you should record:

  • The date and time of the infusion
  • The treatment used (include the brand name, the expiration date, the lot number, and the number of units administered)
  • The reason for the infusion (for example: scheduled prophylaxis, pre-surgery)

Treatment Log Options

In today’s digital age there are many choices for keeping a treatment log. You should work with your HTC to figure out what is the best way for you to start a log because this information can then easily be shared with your HTC. Additional options may be found by searching the Web site of your insurance carrier or the brand of factor you use. These sources often provide simple infusion logs that you can download and print. Alternatively, you could set up your own infusion log on your computer using a word processing or spreadsheet application.

If you have a smart phone, you may wish to check out the numerous mobile apps that allow you to track your bleeds and infusions. The American Thrombosis and Hemostasis Network (ATHN) has a Web-based tool and mobile app that can be used to track bleeds. In addition, with your permission, this treatment information can be downloaded directly into your HTC record. Of course, a simple notepad and pen will also work—just remember to record your bleeds and infusions at each occurrence.

Your treatment log should be kept in a safe place that you can get to easily, and you should bring it with you to every medical appointment. It’s also a good idea to let a loved one know where they can find your treatment log.